We're just winding down from our 14th day of inpatient status! Aidan was able to leave the Clinical Center (aka Building 10/the hospital) both yesterday and today. Though our outings are brief, they do lend some structure and excitment to the days. Yesterday, Carole smuggled Jasmine (our dog) onto NIH grounds. We had a clandestine meeting with her on the playground. As soon as we work out some technical difficulties (i.e., getting a wireless pass code), there will be pictures! (Rumor has it that the individual responsible for wireless access will be back in the office tomorrow. )
Meanwhile a few highlights/factoids...
Aidan slumbers before midnight 7/5!
He gained 0.1kg (TPN successful!)
Pain management still #1 goal
2 days of CSI (craniospinal irridation) to go - 2 weeks of focal treatments after that